JMIR Publications

ABSTRACT

Background:

The increasing prevalence of smart devices has created vast amounts of untapped data, presenting new opportunities for data sharing across various fields, such as environmental sciences, health management, and astrophysics. While a significant portion of the public is willing to donate personal data, we need to better understand how to obtain information about which data assets a person may hold and the risks, benefits, and potential uses of this data exchange mechanism. Developing a trusted data-sharing platform may increase participants’ willingness to donate data and researchers’ ability to return personalized results from research findings.

Objective:

To develop a preliminary list of core requirements for returning individual research results to study participants.

Methods:

We conducted a narrative literature review of existing platforms used to return research results to study participants. The search strategy included English-language articles published between May/2013 and May/2023. Concepts related to returning, disseminating, and sharing research results were searched for in 1) published research reports on Web of Science and MEDLINE, 2) grey literature, and 3) the bibliographies of included articles. Screening and data extraction were performed by two independent reviewers using Covidence. Results and requirements were synthesized thematically.

Results:

Overall, 6,608 abstracts were screened, and 266 articles underwent full-text review to identify eight articles describing the development and evaluation of seven different return of results systems. Seven of the eight articles reported the use of multi-modal dissemination methods, including a combination of physical documents, emails, phone calls, and digital platforms to support text and graphical data representations. One article outlined accessibility features to serve the specific participant population. None of the articles described in detail how results were or were not anonymized. Four studies relied on an expert or clinician to share results on behalf of the research team. Additional educational or contextual materials were included alongside results in four studies, including specific materials designed for follow-up with experts and clinicians. Participants were not hesitant to receive unfavourable results and instead aimed to incorporate such information into their lives via lifestyle changes, clinical intervention, or seeking community.

Conclusions:

Return of results systems should support multiple modes of dissemination for text-based results. Additional educational and lay-language materials are helpful for participants to understand and use information gained from receiving results.